A Few More Days

We had Evie’s follow up yesterday which we thought would be the last one, but they decided to have us keep turning the screws until the mechanism jammed up. They put 25mm distractors in which in theory would allow you to turn the screws for 25 days, but the plastic surgeon said they usually only last 20-24 days. Today will be day 24. So we will head back in tomorrow to hopefully have the screws removed (there’s no some question as to whether or not they’re the type that can be detached from the distractors, but they didn’t want to try until we were completely done).

Here she is after she exhausted herself from getting worked up just being in the radiology waiting area. Poor little girl as quite the anxiety issues now.


Her jaw is really far out now. I wish we hadn’t needed to go out that far, but like I’ve said before, we wanted to give her the best chance of getting the trach out and have as long as possible before she potentially needs another jaw distraction.


She’s not very keen on me trying to get a picture of her jaw, so this is the best shot I’ve got for now.

We also replaced her gtube yesterday. Ugh. It was terrible. The doctor got the old one out with a good yank, but that sent Evie into hysterics. As they tried to place the new one (we did decide to go with a balloon style, the AMT mini one), she kept tightening her stomach so we could get the more floppy one in. After 20ish minutes and sizing down from an 18fr to a 16 fr, we used the pin used to get the Bard in and out to stiffen the new style and get it in. Evie is still pretty tender and doesn’t like us messing with it to feed her, but it’s working really well. It’s hard learning a new way to do things when we could (and did!) practically do it in our sleep!

Here’s what the stoma (hole) looks like with no gtube in. I snapped a quick picture while they were trying to figure out what to do to get the new one in.



We're very anxious to get home since it's been almost a full month since we left! It's been a long and exhausting month, that's for sure. Hopefully by this weekend, we'll be back in our own beds!


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